I spent the last two days with Kevin Nguyen, a thoughtful and funny 17-year-old, whose immune system is deteriorating because of a genetic disease that killed his two brothers.

Kevin loves his family, eating kal-bi and lobster fried rice and playing video games on his 50-inch flat screen TV. He is a self-described “gamer” who has a definite creative streak and would love to design games someday. His ideal character for a game would be much like himself — young, brave and eager for adventure.

The character he imagined would carry a sword to fight off evil-doers. Kevin’s counselor shared with me that he carries a miniature sword on a key chain in his pocket.

The oldest brother in the family, Tuan, was 17 when he passed away in 2006. Kevin and Anthony, the youngest brother, shared a room in December when both were hospitalized. Anthony later died from his illness. Now, photos of Tuan and Anthony keep their memories alive in the living room of the family’s Kalihi home.

The boys had a chance to live had they found a match with a bone marrow donor during a certain stage of their illness. Because of the characteristics of bone marrow, patients have the best chance of finding a match within their same ethnic group. An article published about the Nguyen boys in the Vietnamese NHA Magazine in 2007, when Anthony was still alive, points out the extreme difficulty of finding a match for a bone marrow transplant that could have saved their lives. According to the article, the number of Vietnamese donors in the National Marrow Donor Program Registry is less than 1 percent of all donors. Of those who have registered, even fewer go on to actually donate.

As you can see, there is a great need for minority donors to register. Hawaii, with its large population of minorities and mixed-race individuals, has the opportunity to add to the number of minority donors in the national registry.

When I interviewed Kevin for the video on Wednesday, he talked about his hobbies, his family and studying for his driver’s permit test. I was amazed at his strength through not only living with his own illness, but in weathering the tremendous loss of his brothers. He must think about them every time he picks up his game console and finds himself playing alone in his living room.

At the end of the taping, I asked (as I always do) if he had anything else he wanted to say. He immediately turned to the camera and said, seriously: “Please help the bone marrow drive.”

If there is anything I think Kevin would want readers to take away from his family’s inspiring and sad story, it is that more people like him and his brothers can be given a fighting chance with an increased awareness about and participation in bone marrow donation.

For more information about bone marrow donation and the National Marrow Donor Program Registry, visit their website.

Photo by Joaquin Siopack for The Honolulu Advertiser.

Tags: health

This entry was posted on Friday, April 11th, 2008 at 11:40 am and is filed under Quarterlife Island. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.